Guilt

Does anyone here besides me feel guilty for being in their situation? It's eaten at me ever since my operation. Maybe even before I had the operation....it took so long to make a tx decision....for fear of making the wrong choice. And now that I've made the wrong choice...it's something I've lived with since. And there's the very real chance that I will live with it the rest of my life.

There's also some anger that I chose the tx I did. It feels as if....and this may not be a stretch...that the treatment made me sicker than the disease itself. Before my surgery...the cancer was contained. All the treatment did was to cut the cancer loose in my body.

Their seemed to be a loose consensus among the (dozens of 'em) of doctors I spoke with....that I would not even begin to feel the effects of my cancer for around 10 years. The guy at JH told me..."You will not begin to reap the benefits of this operation for another 10 years". (that's a direct quote)

Well...I come home....go to the best surgeon in town...he has over 1200 operations....is on TV...I spoke with another physician who had used him to treat his own PCa....and it was...quite frankly...the worst decision of my life.

How does one not feel regret? How does one not feel responsible? I am responsible. I did not trust my instincts. I knew this man was a showman. I knew when I asked him about his positive margin rate and he told me..."We don't keep those records"....I knew that was a bunch horse feathers. My instincts told me I was not giving myself my best shot at a cure in this situation. But....I did not trust my instincts.

It's difficult to trust one's own instincts ... when they are in direct opposition to the expert in his field. How am I supposed to know more than the expert? My instincts told me I knew more than he knew about my cancer. My instincts told me he was telling me bold face lies. But I went with him anyway.

Has anyone else made mistakes that they regret? Do you feel responsible? Do you feel guilty for not being true to yourself?

Thanks

I have a friend who underwent brachytherapy and regrets his decision. It has been 5 years for him and he has very bad urinary urgency. He regrets that he didn't have the cancer removed and not getting a pathology report. His PSA is done, but it will never be zero and it continually haunts him.

I had a highly trained oncology urology that was train at M.D. Anderson to do my robotic surgery. He even took frozen sections for pathology during my surgery. Yet I had positive margins. Typically even the best prostatectomy surgeons have 10 to over 20 percent incidence of positive margins.

Positive margins don't always rear its ugly head, or it can years down the road. Typical positive margins occur at the apex (bottom) and less frequently at the laterally near the nerves for sexual function, and then at the base where the bladder connect to the prostate.

Bottom line, I think most of us always wondered if we took a different approach to a cure would it be better. You can ponder that until it makes you sick. My thought is it could be better or it could be worse. But there are no guarantees when it comes to a biological system. Any can and do happen.

RobLee said...
I'm beginning to have some doubts about the surgeon who did my AUS. I had a choice between a younger guy and an older guy, both local, or travel some distance away. The older guy said he used to do 50 a year back when the AMS800 first came out, but now he only does about 25 per year. I asked the younger guy how many he had done and he would only tell me that he has been a urologist for seventeen years. I asked if he could estimate, and he just repeated the seventeen years. I later asked him again, and was a little disturbed that he would not give me a straight answer. But he is the surgeon in a large Uro group here and there are only two large Uro groups here. Plus the RO in this group has his treatment facility right around the corner from where I live. Sure beats driving half hour to an hour each way for daily RT.

So do I feel guilty? Maybe a little, but that won't change anything. So I just live with it and don't allow myself to beat myself up over it. "The carrots are cooked".

It was you post yesterday RobLee....in Prat's thread "My Life's Work"....that made me think about how many of us (if any besides me) feels this way.

This is exactly what i'm talking about Rob. If I'm reading your post correctly...you went with the younger surgeon. If so....then you you're down on what I'm talking about? It's like you weighed your options...and even though you might not have had the best feeling about the younger surgeon....you (and please don't let me put words in your mouth Rob...please don't think i'm judging you, it would break my heart if what I say would lead you to believe that...cause it's not my purpose...and I don't believe I''m judging you) but you "compromised" your instincts and chanced it with the younger surgeon....A) Because he's the surgeon...and it's he...that should know *** he's doing....and B) It was a "business decision" on your part....that being....it's much more convenient going with this guy knowing the RT is right around the corner?

(If so...that's EXACTLY what my situation way). Did I describe your situation...thought processes and feelings...accurately Rob? Thank you so much man....

I had a prostatectomy in June 2006 when AS was not a primary option for low Gleason PCa. I made an informed decision with the best information I had at the time. I currently have non-cancer-related health issues, and the answers are not black-and-white, either/or. Thankfully, none are life-threatening, but mere thorns in the flesh. Guilt and regret can be formidable foes and whittle away at our present happiness. I've had a lucky life,and on reflection, much to be grateful for.

Dr. Oliver Sacks, in his book of essays, Gratitude, writes: " What if A and B and C had been different? What sort of a life might I have lived?....And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts...on what is meant by living a good and worthwhile life--achieving a sense of peace within oneself."

Serenity seems to me to be at the core of living a good life. Some kinds of guilt and regret can poison our peace of mind. To the extent that they do, they need to be rooted out.

Tim G said...
Serenity seems to me to be at the core of living a good life. Some kinds of guilt and regret can poison our peace of mind. To the extent that they do, they need to be rooted out.

Thanks Tim. You know exactly what this tread is about. It is about rooting out the poison that's eating at my peace of mind. Guilt and regret have been taking my energies. It's a ... waste. (I was going for a stronger word there...but this is a cancer forum and not a church....so I'll keep my adjectives appropriate to the venue).

And thank you for the Sacks' quote. Much to ponder on. I'd never heard it before .... thank you

and the best with your health issues....

Post Edited (island time) : 6/26/2017 5:32:54 PM (GMT-6)

IT...is it guilt that you're feeling or is it regret? It feels more like regret to me, but maybe I'm not reading you correctly.

If it's regret...boy oh boy, do I have a long list of regrets in my life. Some of those regrets are for things I even feel guilty about since I've done some pretty stupid things over the past 56 years. But a lot of the other regrets I have, I don't feel guilty about at all--perhaps I made the wrong decision in retrospect, but what I did was perfectly reasonable at the time. Seems to me that your treatment decision was also perfectly reasonable. As to how you feel about it now...it would have been impossible to predict in advance. I know it's easy for me to say as some random guy typing on my keyboard, but I don't see how second guessing yourself can be helpful.

BTW, when I think of guilt and PCa it's because I'm doing well (knock on wood) and some of my PCa brothers aren't doing as well. That's a guilt that can nag at me at times.

Island Time, I can totally relate to what I think you are expressing. I don't think I want to go into a lot of details about why I can so relate, not at the moment anyway, but just wanted to say that I do understand what you are talking about.

It's very easy to,look back and regret choices, or feel guilty about them. Especially when things don't go as we'd hoped. But nothing good comes out of that. Still, I can understand (I of all people) how that doesn't make it easier to control how we feel.

There's another issue that is bobbing up and down here below the surface. We all want a doctor who's confident. That's all we can be capable of judging. Their confidence. I can read that a Dr did his fellowship at Harvard. That doesn't mean he's great at what he does. It means he's smart. But we can't judge if he's good at putting the ball in the hoop with nothing but net. We just don't know enough. So to feel guilty or regretful about our choices, may come naturally, but it's not logical.

Michael_T said...
IT...is it guilt that you're feeling or is it regret? It feels more like regret to me, but maybe I'm not reading you correctly.

It's definitely regret. (I'm not the best with "feeling identification"...but that's a no brainer). As to the guilt...I'm unsure. But I believe it's the sort of guilt that you express here...

Michael_T said...
If it's regret...boy oh boy, do I have a long list of regrets in my life. Some of those regrets are for things I even feel guilty about since I've done some pretty stupid things over the past 56 years.

because I was on the operating table of one of the world's preeminent surgeons...and just as they turned the gas on...I got up...and walked out of the Hospital. Word got back to me that the surgeon's (Tewari) comment on that was...."He's a good guy...he just wasn't ready". And he was right. I just wasn't emotionally ready for the operation. And to me....when one has the chance to have the best of the best do their work on you...and you put your clothes back on and say "no thanks"....because one's not "emotionally ready"? *that* is stupid. It's just a dumb thing to do. But hey, it is what it is. And it makes it much easier to "assimilate" (deal with?)....knowing...that you've done this as well. That it's a human thing to do. Smart? NO! Human? definitely. It's a messy thing...life. It's not always pretty...and I just haven't always made the best calls for my own well-being. And I believe you sharing of your experience...is helping me to know...that I am not alone. More to the point..I am not perfect. And *that's* where this guilt may very well be coming from Michael. "Not perfect IT?....GUILTY AS CHARGED SIR! I sentence you to a lifetime of guilt". No win on that front. And no one doing that to me....but me.

Michael_T said...
a lot of the other regrets I have, I don't feel guilty about at all--perhaps I made the wrong decision in retrospect, but what I did was perfectly reasonable at the time. Seems to me that your treatment decision was also perfectly reasonable. As to how you feel about it now...it would have been impossible to predict in advance. I know it's easy for me to say as some random guy typing on my keyboard, but I don't see how second guessing yourself can be helpful.

I don't see you as some guy typing on the internet Michael. I see you as a human being helping me out by sharing what we have in common...that I'm having a difficult time identifying in myself. And you're helping me to do that. There's ALOT of freedom (all there is? IDK)...in knowing....i'm not maybe as perfect as I like for others to believe I am.

Michael_T said...
TW, when I think of guilt and PCa it's because I'm doing well (knock on wood) and some of my PCa brothers aren't doing as well. That's a guilt that can nag at me at times.

Well, Michael...my hope for you (and this can come across wrong on a computer screen, its meant in the best of ways....)..My hope for you is that *that* guilt your feel for *that* reason....remains for a long-long-long time to come Sir. ;)


Oh. And btw...fwiw....Guys who admit to making mistakes....to having regrets....and to maybe even feeling some guilt about the regrets they have because of some of the stupid things they've done? Those men are the men I trust most.

Post Edited (island time) : 6/26/2017 9:06:59 PM (GMT-6)

BillyBob@388 said...
Island Time, I can totally relate to what I think you are expressing. I don't think I want to go into a lot of details about why I can so relate, not at the moment anyway, but just wanted to say that I do understand what you are talking about.

I think you do too BillyBob. I think it's evident to me that you do in the way you express yourself....the way you communicate with others. No details necessary. You've made your point....more than clearly enough for me to understand...that you understand as well.

Thanks

Hi Islandtime

New and inexperienced here so I hope its ok to give my 2 cents. I imagine 90% of the people on this board who may be facing BCR come to the point of regret and go back to that time they were first diagnosed, mull over all the conversations had and question did they do right by themselves if that makes sense! I cannot speak for what went on during your decision time, but i can say that when my hubby was diagnosed, surgery appealed most because of the radiation option was still available as a back up. A final accurate pathology was also a plus in our eyes. And again i think that most guys who face this decision, include that in their pro's list when choosing surgery. We are at the mercy of the medical profession and while so many guys get "lucky" there are those who just don't for one reason or another. The reason is rarely found, we can only guess! There in lies the problem.

I guess what I'm trying to say and hope I'm getting my point across correctly is that maybe you did make the right choice, knowing that BCR could become real. Our first thought is how can i get rid of this, our second is what do i do if it comes back. If you choose RAD first there is no knowing where you would be now but as it stands with your choice you do have options.

I hope this helps in some way

Here's a good thread we had on this very topic a while back. Perhaps an indication that a topic has a certain degree of importance, if we seem to be returning to it on a regular basis:

www.healingwell.com/community/default.aspx?f=35&m=3628486

And here's another angle on all this, in a quote from a post I made in that thread:

This discussion reminds me of a recurrent theme in fantasy literature, namely that of getting the chance to go back in time and change things, thinking that altering the past will somehow make the future better.

In a typical plot of this kind the hero regrets something he did, or didn’t do, in the past. He is convinced that if he can just go back in time, redo that thing, and thus alter the future, that things will turn out oh so much better than they did the first time.

So in the story, through some supernatural means, he gets his chance, goes back in time to that situation, makes different choices and alters events, and thus creates a new future.

And as he is returning to the present he is congratulating himself on how much better the present will be now, thanks to the changes in the past that he has made.

But when he gets back to the present what he finds is that things are different now but not necessarily better. In fact, they may actually have become worse because of what he has done!

Moral of story: we don't have enough wisdom to play God in this way.

So, this is another reason why we shouldn't beat ourselves up too much about decisions we made in the past along the PCa road. Because if we really could go back and change things from the way we did them the first time, maybe select a different treatment plan, there are no guarantees about what the outcome of that would have been, and we might just have wound up like in the story.

RobLee said...

island time said...
It's like you weighed your options...and even though you might not have had the best feeling about the younger surgeon.... you "compromised" your instincts and chanced it with the younger surgeon....

As you said so succinctly, yes I ignored my instinct, the gut feeling that something was wrong, and instead used logic. Everything was pointing to the choice that I made. It was the right decision but with the wrong outcome. Not that it actually would have been any better the other way, but just possibly.

Thanks Rob. Man i was gonna let this thread go. My purpose isn't to try and to get people to understand. (one either understands or one doesn't). My purpose was in seeing how those who understand what it is to not follow one's instincts....how they deal with that....and I'm learning the first step (for me) in learning how to deal with it is knowing I am not the only one who *knowingly* did not fulfill my obligation to myself. It lets me know...I am not alone. That is worth it's weight in gold. It makes me feel human.

BillyBob's done it. Micheal_T's done it. I think you've done it to a certain degree.




I guess the easiest way to explain it....is.....by asking the question differently.....the title to this thread should have been...

"Why do we teach our children to always do their best?"

Sure...we do it because it enhances their ability to achieve their full potential. But....the MAIN benefit from doing one's best....is.....that no matter the outcome, you'll always know....you did your best. Even if you fail....you won't have guilt. You may have regrets that you might would have done something differently in hindsight. But...you won't feel guilty for not applying yourself. You didn't try to win with less than full effort..

A coach tells his team....."Do your best". It not only increases the chance of winning....but there's a larger reason. If they do their best....they can hold their head high, in the face of defeat, and have not feel guilty that they lost because of lack of effort.

"It's not whether you win or lose that counts, it's how you play the game". This means...*to me*....that if you do your best....you will have nothing to be ashamed of.. regardless of the outcome.


I don't regret my treatment decision. And a recurrence isn't the issue. It's how I feel about not doing what I knew to be in my own best interest at the time. And i knew I wasn't doing what was in my best interest GOING INTO IT.

I tried to "cheat" my way through. Because...to not "cheat"...was just too darn hard. Took too much effort.


What I've learned is that it's not ok to not apply one's self 100%. I've settled for getting the diploma....knowing I didn't have to apply myself fully. I've settled in my work life....knowing I could be successful without full effort.

but...when it comes to a life or death decision....when it comes to cancer....compromise is tough...when it doesn't provide the outcome one desired.